“There must be some good stuff about having tunnel vision”, a friend said to me the other day. It means you don’t have to see all the shit around you. We were walking down a side street at the time, me holding onto her elbow. I asked her to elaborate and she said ‘’Well, you missed seeing a guy peeing on a tree two meters from us. It was disgusting.’’
What my friend didn’t understand, is that I would have loved to have seen the guy pee up the tree; that I would have given anything to have seen it. Because if I had, it would mean that I had all my vision back, not the 8% that I have left, thanks to a deteriorating, genetically inherited eye disease called retinitis pigmentosa (or RP).
Basically, if you have RP, the cells in your retina die over time. You’re never sure at what pace the cells die. Deterioration of the cells steadily continues, until you have tunnel vision, eventually going blind.
I didn’t tell my friend that given the choice, I would rather have a chance to see everything – the good the bad and the ugly, because going blind really sucks.
I didn’t tell her for the same reason that I don’t often tell my family. Because they are well-meaning and I don’t want to worry them. I assume that people don’t want to hear hard luck stories but would far rather read motivational, overcoming adversity type stories like blind people climbing Mount Everest or running marathons. Well there are plenty of those, including my own fitness story…but I realise more and more that it’s important for people with disabilities to be open and honest about their challenges so that their family and friends can better understand them. So that we can all work together to advocate and raise awareness and that research can continue to find a cure.
Because if it didn’t suck to go blind, there would be no need for a cure.
Perhaps someone you know is partially sighted or going blind, a loved one or a friend? Maybe reading this blog can help you understand them a little better.
Although people with RP all have different stages of vision left, we all share some of the same challenges despite having our own individual journeys. Every partially-sighted person would have their own “why it sucks to go blind” list.
This is mine.
Imagine firstly that you have tunnel vision. This would be like looking at the world through a peep hole. My 8% sight enables me, when I stand directly in front of you, to only see your face. Your chin will be blurry. Maybe in a year or two I will only see your eyes. You never know how fast your eyesight will deteriorate.
The uncertainty sucks. It clouds everything. I can’t enjoy a sunset, or my children’s faces without wondering how long I still will be able to see them. I no longer enjoy planning my bucket list for my retirement years; is there any point going to Egypt if I can’t see the pyramids?
The next thing that sucks is constantly banging and injuring myself. It hurts and sends an adrenaline jolt through my body each time I bang my shins or split my head open.
It super sucks when people who love you tell you to ‘’be more careful’’, because it’s exhausting trying to be careful all the time.
It sucks when you ask your friends or family to help you locate something, like your phone and they say ‘’it’s over there.’’ They are probably pointing as they say it, but I don’t see that. So please, give me a bit more, like ‘’to the right of the kettle.’’
It sucks to not get through a meal without knocking over a drink or smacking someone on the face while regaling a story to them (I’m very expressive with my hands; I’m trying to change this). In spite of everyone saying it’s fine, it feels awful. I’m pretty sure everyone secretly thinks I’m really clumsy, or more horrifying, drunk. Especially if I confirm this by tripping on a step when I leave.
It sucks to be a hazard in public. I’ve pushed my shopping trolley into people, tripped over dogs, knocked over toddlers, and grabbed a stranger’s hand thinking it was my fiancé still standing next to me.
Of course much of this could be avoided if I used a cane. I sometimes do, which has its whole own set of challenges. It sucks when someone asks why you’re using a cane if you’re not really blind. It terrifies me knowing I am being judged and patronised. It sucks to see when a child asks his father (loud enough for me to hear) ‘’Why is that lady using a cane?” To see the father so embarrassed; he picks up his child and hurries away. In situations like this I want to say: “Just ask the lady with the cane. I don’t bite and maybe your child and you will be more informed.”
It sucks to assume that a chair at the cinema is free only to sit in a child’s lap, scattering their popcorn everywhere.
It sucks even more trying to explain to an angry parent ‘’I’m sorry I’m partially sighted…’’
It sucks that most of much of my enjoyment is around creativity that requires sight. Painting, gardening and crafts.
But mostly, it sucks to be terrified. Terrified of not seeing a mugger following you, not see a car pulling out. Terrified of how it will be to lose my sight altogether. Not to enjoy the many beautiful things that surround me, nor to be able to read people’s faces, not to see my children’s faces light up.
I am terrified that one of my children have inherited RP. That maybe there won’t be a cure in their lifetime. I am terrified that I don’t have the wisdom, grace and positivity it would take to live happily as a blind person. Will I be reduced to depression; become bitter and unbearable?
I could go on and on. There is so much that sucks about going blind.
However, it would suck a lot less if friends and strangers were more informed. If they slowed down enough to include you in their lives, and understood that you don’t have to be totally blind to need a cane. If every now and then give you the time to not have to be brave, and to allow you to have a rant on how much going blind sucks.
YOU can make a difference by supporting the wonderful work that Retina South Africa is doing in raising awareness and doing research on finding a cure for retinal degenerative diseases which affect hundreds of thousands of South Africans and millions worldwide.